In this uncommon condition there is congenital fusion of the proximal ends of the radius and ulna, fixing the forearm in varying degrees of pronation. In about 60 percent of cases, involvement is bilateral.
Male and female incidence is approximately equal.
There are three types of radioulnar synostosis.
First type is true congenital radioulnar synostosis where ulna and the upper end of the radius are closely fused together. The radial head may be fused to the ulna, or it may be completely absent.
The radial shaft is bowed to a greater degree than normal and is longer and thicker than the ulna. A
The second type is that in which the radial head is malformed and posteriorly dislocated.The proximal end of the radius is fused with the upper shaft of the ulna.
In the third type, the rarest, the ulna and radius may be attached, at a point just distal to their upper ends, by a short, thick, interosseous ligament that prevents any pronation or supination, just as if the bones were fused together. This is not a true synostosis.
Congenital radioulnar synostosis is hereditary in some cases, appearing to be a dominant trait . It is caused by a developmental arrest of longitudinal segmentation.
Clinical Findings
There is no motion of the radius or the ulna, and the forearm is usually fixed in a position of mid-or hyperpronation.
The lack of supination of the forearm is compensated for somewhat by rotation at the glenohumeral joint, though it is impossible for the palm to be fully supinated. The elbow joint and the wrist are able to move freely, though extension of the elbow may be somewhat limited.
The degree of functional disability varies according to the position in which the forearm is fixed. It may be minimal if the condition is unilateral.
The child may have difficulty with such activities as turning a doorknob, buttoning shirts, and handling eating utensils.
The involved forearm is thinner than normal and somewhat twisted in appearance.
Treatment
Each patients should be individually evaluated to determine the treatment required. Surgical separation of the synostosis is not advised, as results have been poor.
In cases of extreme pronation, an osteotomy in the proximal thirds of the radius and ulna may be performed to place the forearm in functional position.
I’m a 33 year old social worker from Brooklyn and it wasn’t until today that I knew what my condition was called. It feels really good to know the actual name and to know that there are others out there. I was born with Radio-ulnar Synostosis in both arms and had been self-conscious about it for years (and still am). It’s amazing how I’ve been able to adjust to things like taking change, playing guitar on my lap and holding heavy things by curling my fingers up and using the top part of my hands and arms. It doesn’t really limit me much these days but it is annoying especially when what one gentleman mention- whiping my bum. I have a 2 year old son who doesn’t have the condition. It would be great to connect with other who have this condition and thank you for creating this forum.
Wow i have been dealing with my right arm hurting all day today so i went to google and found out all of you have what i have been dealing with all my life ..Shocked i was told there was only 500 reported in 1969.. When I was born, I was not able to rotate my wrist My mother took me to a doctor @ the age of 3 where he did some x-rays only to discover that my ulna and radius bones were fused together. (and still are)@ the wrist and elbow This is something that I have been dealing with for 43 years now, I have so many questions as to why this happened.. I to have made adaptations as how i receive thingsin my hand,such as money and other objects that people are handing over to me. I’m just so shocked to see so many ppl that has the same thing..My right arm is ex-trimly worse then my left lots of pain My elbows are so strange looking compared to outers i have dealt with this all my life and haven’t been to a Dr regarding my condition since i was a kid in the 70′s I’m thinking i might need to see a Dr in my 40′s do to the discomfort i am having wish i could post a pic of my right arm it has progressive lee gotten worse with age wondering if anyone else is having the same issues like me ?? God i could cut my arm off today lol
tiffanykinsey [at] gmail.com
I am 36 years old and I have bilateral radioulnar synostosis. I have always been able to find a way to get things done. But now that I am older I am in so much pain from constantly rotating out my shoulders I feel as if I can barely move. No one understands that you can’t turn your hand over at the drive thru you have to hug people with the back of your hands. When my children were babies I had to rest their head on the back of my hand while washed their hair. No one else in my family has this condition. I also have only been to the doctor once in 1979 and told my parents nothing could be done. But it has gotten so much worse such decreased limited mobility and terrible pain. Please let me know if anyone has found help for our conditon that would help with the pain.
hi my son is 2 years old and has been diagnosed with this problem, the speacilist at the hospital didnt seem very helpfull at all and reading your comments im worried for him , im going to see my doctor about the other things that he could have kidney,heart issues ive read here, i hope he dosnet have to many problems writing etc, he never crawled he sliverd along the floor he holds cutlery differently, and crayons now!! plus his feet turn in too , im so glad to of found this site so helpfull
My daughter, who is 19 months old, has just been diagnosed with this. It has come as a huge shock to us especially as it was only noticed by her nursery school (we thought she was just a little awkward when we washed her hands and played games which involved her holding her hands out with her palms facing upwards).
Like @ Emma Green my daughter didn’t crawl properly for a long time – she pulled herself along in a kind of commando crawl style. She did eventually crawl ‘normally’ but it took a lot of effort.
At the moment it doesn’t seem to stop her doing too much, and I guess she will never know any different in her life but I am worried about long term affects as well as other health problems. She is always very tired and I now wonder if it is because normal things are a lot of effort for her.
I have been very interested to read other peoples comments and I am going to ask our consultant for more advice and information about how it is going to affect our lives. We are also going to be referred for a second opinion although having seen her x-rays there is no doubt that she has the condition.
I feel very sad that she has this condition, somehow that I have failed her.
Wow! I have been thinking about who else has this since I was very little. My mother is an RT so she knew what it mean’t when my ped dr told her 23 years ago when I was born. They had originally thought it was due to my broken clavicle (broken during delivery) but when they did another xray after my clavicle was suppose to be healed they found it. Radioulnar Synostosis…Really when I think about how it hurts my feelings sometimes when people think I am deformed or “why is she grabbing her change like that” or when I was younger and our entire school did a dance where we put both of our hands in the suprine position and mine stayed prone…I went home a cried, and other example is that I always used to pretend that I was scared of people handing be a bug so I didn’t have to show them. One time a boyfriend years ago broke up with me after he found out said it disgusted him. My point is…inside I feel sad and a little like a freak, but outside I act like it doesn’t bother me. But I know that there are so many other people with real problems lol you know like they cannot walk or move at all, their face is completely scared from massive burns. And then my problem seems so silly. I am so happy to have found this if anyone would like to talk more about it, please email me (hope siteholder doesn’t mind) grumpypunkity [at] yahoo [dot] com
*extra note, I often feel a uncomfortable stiffness in my upper extremities and I read here that some of you with age have pain. That’s terrible I wonder if there is a way to avoid or help this.
Dr Arun Pal Singh Reply:
October 15th, 2010 at 3:57 pm
@Caitlyn,
I am allowing addresses for a while in non linked form. But I am seeing that there is an increased trend.
Still I am contemplating on how to deal with issue.
My wife has this condition and has dealt with it well until about her mid twenties, and the main issue with it seems to be the horrendous upper back and neck pain associated with the abnormal wear and tear of having to compensate for lack of supination. Been to many doctors but with no real fix for it as no one has really researched this area. we are trying to figure out more about it to know how to more aggressively attack the muscular pain associated with this issue. The pain needless to say has become chronic and I feel that there are ways to alleviate it with more studying and communication of the problem. Please contact me if anyone has any similar associations with this problem or suggestions on treatment.
We almost named our daughter Emma. She just turned 13, and has had this condition since birth affecting both her wrists. She cannot rotate her palms past 90 degrees, and apparently needs a Doctor’s note for gym (since she cannot do certain chin-ups properly). However, some of the things she “can do” are truly incredible… She plays everything from piano to roller hockey.. and gets her inspiration from the U.S. Women’s Hockey Team. Her wrist shots are amazing. No doubt, she is conscientious of her condition, but there is no end to her accomplishments…
I have been suffering with this same syndrome since I was born , it didnt bother me that much when I was younger , recently it has started to cause me severe cramps and pains in my arms, especially like changing gear when driving etc … My 7 year old son also has this , he cannot turn his left arm atall, When we visited the hospital regarding this ,they advised that it is a rare condition and they prefer not to operate on the patient unless it is causing severe pains or reducing the quality of life .
I would also like to point something incredible out also, my son , myself , my dad, my grandmother and great grandmother all had this same syndrome and it is the first born child in each generation that it passes onto ( I have a daughter also and she is fine , my dad has 8 brothers and sisters and he is the only one with condition he is also the oldest )
We have learned to just live with this condition , it can be very embarrasing at times and annoying however I suppose there is people in the world alot worse off than us .
A few Months ago my ten yr. old was diagnosed with this condition. She is haveing a hard time because the muscels in her right arm are now being effected by her condition. I know that surgery is not an option I’m just woundering because this is so rare and the Doc’s here have only seen this once or twice if their maybe any other type of defects that can acomppany this. She is in so much pain and her muscels are swollen and rock hard. I believe this is due to the nerves in the arm that may be getting crushed from the fusing of these bones together am I wrong? My nero sureon and I spoke about it and he told me that there are alot of nerves there. She is loosing use of her arm it’s that bad.What type of specialist can I take her to? How can I help her and is there other defects besides heart defects that can be present with this that she should be checked for? Please help — Scared mom and daughter Thank you!
Dr Arun Pal Singh Reply:
November 14th, 2010 at 7:39 am
@Jenniffer Hearn,
You need to see an pediatric orthopedic surgeon.
I left a post maybe a year ago. I am 38 years old, male, bilateral, 0 degree rotation, 100% pronation, and neither arms will straighten all the way due to over growth of bone preventing the arms from stratening. I’ve spent about 10 years in the medical field and studying anatomy and physiology, trying to understand this condition. I also suffer from both physical and emotional pain. The arms and effected muscles, tendons, ligaments, and bones were not created to take on the added strain and stress of lifting, reaching, or hyperextending, let alone hyper-rotation that the arms undergo. There are very little statistics and few documented cases…this causes little interest in the medical community (with the exception of the repected Dr. Singh “Thank you for this site”) Everthing I’ve stated has come from personal experience and research and does not in any way pose as medical advice, facts, or statistics. This post is just my opinion. If you would like to talk you can contact me at jownes-at-cfl-dot-rr-dot-com, (please allow as I too am searching for information and personal experiences) This site has been a blessing to me knowing that I’m not alone.
hi Roger,
What you just wrote about your wife having upper back and neck pain because of being unable to supinate is quite enlightening. I’m 66 and it had this all my life (of course) and have also had a lot of neck stiffness and upper back pain. Never thought to associate the two. I’ve been having some problems may left wrist lately that I’m sure are because of inability to supinate. And I know that both my elbows and my shoulders suffer because of the condition. Someone here in the form wrote about playing guitar in their lap and I thought that was a tremendous idea, because I can definitely relate. I cannot play bar chords, because of my wrist, and finally realized that that was why couldn’t throw a football. Dropping change, holding forks funny, personal hygiene problems are all things I’ve dealt with, but the funny thing is. I think that our US is also what got me a forever aiding and get me out of the Vietnam War, so not all bad.
This forum is very helpful Dr. Singh. Thank you.
my son also have radio ulnar condition since he was born but i noticed when he was 1year and half and now he’s 2 it seems that doctors can’t do anything about it when i went to his first appointment for orthopedic they took xrays and told me that he had radioulnar congenital and that’s whats all but becaused i waited a lot for that apppointment in the hospital at nyph, i took him to a private doctor and he was the one that told me about what my baby has this i don’t know what to espect now in the hospital they gave me another apppointmet for a hand specialty for another 3months my baby is growin as now normal but im noticed that he’s going to have problems w. a lot of things like writing eatin openin doors and changing cloths what should i do i would like to know if i can apply for social security disabilities because im a low income and it seems im going to need help in the future w my baby please help
Dr Arun Pal Singh Reply:
November 27th, 2010 at 7:02 am
@edangel11,
Please go through the article and comments here so that you understand the process and limitations of science in treatment.
That would enable you to ask better questions for your son’s condition when you meet the doctor.
Hi, i am really shocked at reading some of these life stories, my daughter was diagnosed with this condition when she was 2, she is now nearly 6. for ages i have tried to research it but there never seems to be much information on it, i felt bad because it was just a random day when we were washing her hands when she was 2 and i noticed that she was’nt turning her left arm over properly, so took her the doctors and they referred us to Alder Hey childrens hospital as they are better to deal with it, the surgeon that we seen said that this was only the 12th person he had seen in 50yrs of his time as a doctor, we have to go back once a yr for x-rays for there research aswell as keeping us informed. i worry about how much she may suffer after reading the above
michelle xx
Michelle,
Please dont worry too much. My son has it in his left arm too (he is now 12, and we found it in the same way as you!) and although he sometimes gets frustrated he manages very well. He is even a goalkeeper!! He is also kept an eye on every six months just to check the power and strength in his muscles and because of the rotation there isnt much scope to build the forearm muscles. I think I notice it more than anyone as I feel guilty that its there although obviously its not my fault!!! Please feel free to email me if you want to discuss it further or would like tips for muscle building! Linda xx
Michelle,
Hi. There are definitely different degrees of this. I was born with it and am 49. It has not stopped me from living a normal life. You learn to adapt. As for pain, just keep an eye out but let your daughter tell you. I have had 3 surgeries on ony arm. The first was when I was five as they were going to try and fix it. Splitting the bones had no effect and they grew right back. Once was in my early 20′s because my ulnar nerve was trapped in my elbow (again everyone is different) and the 3rd was in my mid 40′s on my wrist because I had a job that required typing 8 hours a day. As with most repetitive motion, it started to cause fluid build up. Many people suffer carpal tunnel for the same reason. Try not to worry so much and the best advice is to find a good orthopedist – preferrably one who specializes in upper extremities. We are rare but it doesnt mean we cant live normally…we just do things a little different from the rest.
Thank God I found this forum. My 5-year-old son was diagnosed just today with congenital Radioulnar Synostosis in his left arm only. It is the first, true form that you described — I saw it plain as day on the X-ray, the radial head is present but completely fused to the ulna.
I find so much in common with other commenters. We’ve know he had a problem for some time, when we began observing that he couldn’t supinate his left arm. He can barely rotate it, when he tries it raises up and out instead. as a young child when we tried to put something in his hand, instead of supinating his right arm (which he can do with no problem), he would raise his left arm up and straight back until his hand was over his shoulder with the palm was facing up. He also didn’t crawl normally, but scooted on his bottom, propelling himseld by pulling with his feet and pushing with his right arm. Interestingly enouogh he used it to his advantage — his left arm was free to carry things.
The irony of his RS being unilateral is that he’s showing signs of being left-handed. His kindergarten teacher thinks we should make him become right-handed to avoid complicaitons, but as a left-handed person, I am ambivalent about htis. It has been suggested that we consult the school district’s Physical Therapy department before heeding the teacher’s advice.
Also, it’s interesting that while there’s no history of Radioulnar Synostosis in my or my wife’s family, I was born with a congenitally defective kidney, and my sister was born with Hip Dysplacia. I am struggling with guilt over the idea I might have passed on lousy genes to my kid. On the other hand, I’m relieved that it wasn’t somehting we caused or could have prevented.
Dr Arun Pal Singh,
Sorry about my email address! I think I just go to so excited to see some communication about this and really wanted to chat with others without filling up your forum.
Another thing…here lately I have been having a lot of arm pain, my lower and upper arm (not really sholder)…Anyway the pain is terrible I have not cried from pain, not even when I was in labor. Maybe I am just scared this will become more often. Seems to happen more at night time, my mother said I should see a rheumatologist but isn’t that a doctor that specializes in arthritis? I didn’t think that would help.
My mother talked to an Ortho at work he said it was probably tendonitis, but I believe it is because of my arms being the way they are….
Thank you so much for replying to our comments
Brian,
my son has the problem in his left arm too, and he is left handed for sure, he is 7. I was worried about it too, especially because he was so bad with coloring. But we figured it out he just hated to color, he can write and draw just fine, no problem with holding pencil and using it. However, could not use spoon properly, so he switched by himself eating right hand and still writes with left. So I think your son will adapt on it’s own, he will figure out the best way for himself.
My son was just diagnosed with unilateral radioulnar synostosis in Nov. 2010. He was 18 months old. We had always noticed that he had extra fat rings in his right arm and that he used that arm differently. We thought he was double jointed. We never looked into it that much because he was still able to use it and get things done. It was our daycare provider that found the problem when trying to teach hand washing. He can not turn his his so that his palm is facing up. That prompted us to see a specialist. We were told that surgery would only prove to complicate things further down the the road and that for now, we will just watch him. We are to watch for muscle development. If he seems to be lacking then we will do physical therapy. His grasp is weak in that hand. Would love to pick some of your brains about this. mlgenereux (at) gmail (dot) com.
I have just recently found out my 2 yr old son has this too. I was really shocked. Now, that I know what it is, I dont really know how to deal with it when he is growing up. Does it hurt as you grow up?
I noticed it when he was about a yr old. He really couldnt turn his arms fully unless he turned his whole body with his arms. My son’s Day Care Teacher noticed it too when she was trying to wash his hands and told me to check on him. When I took him to the Emeg. the doctor told me it was just tight muscles. So we just left. Then I noticed that how he was catching and turning door knobs, it just didnt feel right in my guts that it wasnt just tight muscles, so I took him to see OUR family doctor. He noticed right away so he made us go to the x-rays right away. But I didnt know until in January 5th when I went to see him again because we were in a hurry that day. So, I am still waiting on to see the specialist about his condition.
It still cant dawn on me that my son has a deformity,
I need to talk to someone about this who knows more about it. Ease my thinking and worries.
How do you react when you find out that your son/daughter has this condition?
I still cant really wrap my head around it. But when I look at my son and his activities it doesnt seem any different to me. He is just the same baby I have been raising since birth.
He is a well active young boy.
But I have went to see our family doctor and he hasnt gotten back to me if we are able to see a specialist yet. I really want to ask him/her questions regarding his situation. Its not only he has this problem on one arm but its on both arms. It doesnt really bother him at all. He doesnt notice it. But will it hurt in the future when he gets older?
I need more advice and information than the one I am finding online.
I’m now 32yr old and mother of three. My kids don’t have it. I have it on my left arm. Not as bad as most people on this website. I can type and hold things. I can bend and extend my arm. I can’s touch my shoulder. I can only rotate it at the shoulder but can’t supinate all the way just halfway like if I’m going to shake a hand. I can freely move my wrist and there are a few fused carpals. My ulnar is shorter than my radius. Sometimes the middle of my arm where the elbow is hurts and my brachialis hurts cause my biceps brachii isn’t getting used. I’m still trying to figure out how to strengthen my muscles this is what the doctor recommended. He said if anything hurt while doing something to adapt, lessen the activity, or to drop the activity all together. He gave me a brace which gave my muscle a chance to rest. I baby my left arm so my right arm is stronger than my left. Like everyone I wondered my whole life what happened to my arm. I went through massage school and got certified. It was there that my instructors were kind enough to sent me to an arm specialist that they new. He did say surgery wasn’t going to help and giving massage would definitely give me more problems. Stubborn as I am, I still want to do some type of healing work. I’m learning lymph massage. I think I would have been okay if I hadn’t done so many massages at the spa (and better boundaries). To feel better I get myofascial release combined with massage and stretching and chiropractic work along with a machine that helps relax the muscles. I got a massage wand for Christmas and so I can massage the muscles in my shoulder and arm. To massage my fingers I warm up a small stone or just use it at room temperature. Another thing that I learned not to do is raise my shoulders. If you can’t afford massage or bodywork I would recommend you find a healing arts school. I’m open to talk and share with anyone. orellanb at yahoo dot com. Thanks. This page is a blessing to me.
I have a fracture
Dr Arun Pal Singh Reply:
January 22nd, 2011 at 2:24 pm
@adriana,
Do you wish any info regarding that?
HI MARY
))
My daughter is a year old and I knew she had RUS (both) just several weeks ago. My son who is 9 years old was diagnosed with the condition 3 years ago and has been seeing a pediatric ortho specialist in FL on a yearly basis. My son and I were told that because he is NOT experiencing any pain, and is adapting so well with his condition, that he would not require the surgery at this time. Thankfully, the progression has been slow and he won’t have to be seen for another 2 years unless he starts experiencing pain. My daughter, is adapting well too. She is crawling, self feeding, etc. and is doing well. She has not given me any indication that she has any discomfort or pain. My doctor has not noticed that she has the same condition but I feel very strongtly that she does not have to see a specialist so young unless I notice a change. I don’t want her getting too many x-rays at such a young age and I am praying she will adapt well. Occupational therapy might be a good idea if your 18 month old is having some difficulty in day to day life…..I myself am considering it when I see anything that may pose a challenge for either of my two children. My husband coincidentally has the same condition on his right arm and very mild. Can you believe he never knew he had this problem??? He is a technician, using his arms/hands 10 hours daily and never had a problem. He only discovered this when my son was diagnosed….
As for surgery, thankfully my children are adapting well and with no pain. From reading I read that success rate is quite low and my husband and I are in prayer of making a decision when and if the time comes. My husband has been a shining example/ and encourager to us at the hope that my children will adapt, as he has. Everyone is different of course so we take it day by day. Your child may surprise you, as have ours to now, how well they learn to adapt. My son knows of his condition and is fully aware that his ARMS are different than other children’s. He doesn’t care and he has a very upbeat, strong personality. He is a drummer and ping pong player and is doing everything he loves to do.
Hi Sandi
Do your kids have extra rings on their arms-like rolls of fat? Do their arms look different?
My daughter does but the specialist didn’t seem to think it was connected to the condition.
I’m very interested to hear that both your children and your husband have it-I was under the impression it was a totally isolated condition…
But I am very encouraged to hear how well they are all coping and that your son particularly is doing normal things that kids do.
Emma
Sandi,
Thank you for the encouraging words.
So far, my son is doing great. He doesn’t know any difference yet and has adapted. He does use his left hand more than his right. His right arm is the one with the RUS. Developmentaly he is right on track. The doctor did tell us that his arm is in a good position. I just worry about things down the road.
It’s been great finding this forum! I’ve had a few people personally contanct me and it’s been nice to communicate with others in the same situation.
We are on a plan to see the specialist every year.
Today is the 1st time I heard “Radioulnar Synostosis” which is the medical terminology for the condition that my 2 years old son have. Our pediatrician doctor is going to recommend us to meet an orthopedist that will further examine his condition. I have been searching all over internet to know more about this and luckily I found this site that has some sharings from people with various ages. I noticed my son inflexibility when supinate his both arm since he was a baby. But at that moment I thought it’s just because he is still baby and will gain flexibility when he is getting older. Lately we start noticing more when he is trying to eat, or wash hands, or when playing/grabbing a something. As far as I know, none of our family history had this condition before. At this moment, I will keep my trust in the Lord and keep finding a safer way to hopefully can heal his condition. I can be reach at [Email - moderated]
Dr Arun Pal Singh Reply:
January 22nd, 2011 at 2:40 pm
@Agus H,
All the best for you. I have stopped putting of emails in the comments.
I understand the need to share and learn from each other but I cannot allow this to become a trend.
No! Do not be disappointed or disheartened.
I am in process of creating a section in the website where users can log in, create communities or groups and share with like minded people who have similar problems and interests.
The change is already being initiated and in couple of days, I should be testing the section.
And soon it would be open to all.
Please bear with me till that time. I am already squeezing more time than I should.
Welcome here and take care.
I have had this my whole life and hate it. I am 22 and although I have come to except and do things a little different I wish I didn’t have this problem. I can’t rotate my left arm at all. In fact my thumb points more down then out to the side when I put my arm out straight. My right arm has a little ability to turn but still not enough to help any. I hate getting change from people which is hard to have a job these days where you don’t. I am a cashier and it makes me feel very insecure when people notice and act like I am so akward when I try to grab change from them. I could never be a waitress either. Also carrying things is tough. Even if its not heavy I have no way to grab onto boxes or most anything in a way that doesn’t feel strange and akward for me. I have been to a dozen+ doctors and specialists and all of them tell me there is nothing that can be done. Not only are my bones fuzed, but my elbow is not aligned correctly. This makes it extremely painful when I hit my so called funny bone! NOT FUNNY. Usually makes me black out. I am most nervous about having children because I can’t support their head at all. I have tried and It is too uncomfortable for me, and dangerous for the child.
Not to wine and complain but I was glad when I saw that other people understand how frustrating it can be. Its not the end of the world but its nice to know someone out there understands because no one here sees how it really effects me.
My beautiful daughter is 15. She was born with an extra toe. All we saw at birth. At approx. two years daycare noticed she caught a ball with one hand on top and also held on to the swing differently. We saw a specialist who stated there was nothing surgically we could do. Luckily with encouragement she adapted well in learning how to use her other arm to eat, bathe, write and even throw a ball, etc. She pefers to use her right hand but can’t unless she does so backwards. I don’t discourage this. Although she has lived a pretty normal life, it saddens me when she cannot make the team or that the school system is not more supportive of her and her amazing effort.
In efforts to live a normal healthy and active life, we have tried out different sports. Track and soccer are sports she can do but she loves volley ball. She has adapted her serve to throw the ball and hit it with her good arm. She has adapted other necessary techniques as well. As a result she has one very developed arm and the other not. I am looking for exercise techniques that may help balance her muscle tone as there does not appear to be anything we can do to build her bicep. I wish there was some one I could find that was willing to work with my daughter in honing her skills with volleyball so she can succeed at her sport. Every time I try to get her help, they end up throwing up their hands on how to help her learn a technique that would work for her. If anyone knows of a sport training site I would be pleased to have it. We live in Colorado Springs, CO.
my 2 years old son have it , i noticed it when they were takin blood because of his congenital thyroid and the nurse found out that he couldn’t turn his right arm well, at age1, that’s when i started to search about the rare condition. day and night i always think what will happen to him as he grows up i pray a lot and i let him be very independent now we starting noticed that he cannot eat properly and many little other things. and because its congenital doctors just tells to see them once a year, i have a question does my son need therapy? im not sure they haven’t recommend me to anything yet. another thing being that is a condition, will he qualify for ssdisability? i pray a lot to god to give me the strengh to raise him as normal as possible but it’s hard because i don’t want to leave my child with this condition w/anybabysitter while i work, and i don’t get pay that much to have a good child care provider or daycare!
Thank you Dr Arun Pal Singh we would really love that! You are so kind!
Dr Arun Pal Singh Reply:
February 3rd, 2011 at 2:29 pm
@Caitlyn,
Welcome! It would be live in couple of days.
Hi Mary and Emma and Agus,
Emma, I never really noticed anything unusual about my son’s arms until my now 13 year old son was playing with him. Not one doctor ever noticed anything strange…….then when I took him to the doctor, the nurse put the blood pressure cuff on and noticed his problem. I never realized this was possibly hereditary. I am very thankful to the Lord for my son’s abilities. He has never needed occupational therapy. My daughter, now 13 months, is very active and does everything my other children do. The only thing I do notice now is his elbow is portruding somewhat (not normal like ours).
)) I know that the fact that he is doing so well is because of Him. Keep in prayer 
)
Mary, take heart in knowing that considering the fact that I never noticed this condition years later, my son has adapted very well. I take it day by day knowing that at some point, his condition might change but for now, he continues to amaze me with his strength and also the fact that he is not ashamed that his arms look a bit different. Prayer has been my foundation. Now that I have 2 children with this condition, I will continue praying and doing what I can to help them along. We homeschool (have been for several years) and am thankful that because I homeschool, we have been able to work at his pace (he has remarkable handwriting!). Yes, my son uses his arms differently when holding utensils, etc. but he has adapted and that is important. Occupational therapy is out there but as for our family, we haven’t needed it yet.
Agus, I also believe in the power of healing
Thank you
))
Hello everyone! I just happened to come across this website. Im a 24 year old student and have not been diagnosed with this, but i have MANY of the same difficulties. Like many of you here, when I was 5, my dad wanted to wash my hands. I put my hands out with both palms facing down. Then he asked my to turn them over. I only could turn my right hand. I can not rotate at all my left hand. it stays in a fixed position facing down.My elbows are also different. My left one looks like its turned with the inside (where your arm bends) facing forward. My parents never spoke about this with me, but I knew i was different. I couldn’t hold babies properly, open doors with my left hand, give a hug, and forget going to drive thrus…. Ive probably dropped a thousand stupid coins trying to receive my change. Even texting has to be done with my left pointer finger and right thumb..haha…OMG and going to buffets, i learned to very skillfully carry my plate on top of my left hand. I even waitresses for a short time and would carry trays with my left arm. I mean, i never felt like an outcast. If anything my friends thought it was cool! But recently its been on my mind. I always wanted to know what was wrong. Ive never met anyone with this and when i asked my mom about it she says Im double jointed… right… reading all these stories made me break down and cry. It feels so good knowing that Im not alone. For all the parents who are freaking, please don’t. kids always adapt! its ok to be different. I would always tell myself that God made me different that everyone else… and that made me happy… Now being older, its harder. But the thing that gets me the most are hugs….I want to give my husband a “real” hug. I want to feel it. I adapt to everything else, the drive thru….debit card..lol… I did try to get into the Army, Marines, Ari force, etc and was turned away from them all because my not being to rotate my left arm makes it impossible to shoot a gun. That was a heart breaker… But everything happens fro a reason! Thank you all for sharing your stories. I really feel like you understand! FINALLY someone understands!
Oh i forgot to add that i can supinate my right arm but it is very forced at my shoulder and elbow and hurts.. trying to rotate it fully with just my wrist it will only go 50%…. but hey, Im still freaking out because there are more people like me!
It is to let everyone know that Bone And Spine Communities is live and you can join in. You can interact and share beyond the limitations offered by this comment interface here. I have created a group called Congenital Radioulnar Synostosis and I look forward to your participation.
http://communities.boneandspine.com/groups/congenital-radioulnar-synostosis/
I am a male born in 1961 of Eastern European Jewish descent with bilateral congenital RUS, with no motion in left arm and a 40 degree range in right arm. My mother had congenital RUS in her left arm only. None of my mother’s three sisters or my four siblings, or my four children or dozens of cousins or hundreds of known relatives have this condition. I do not have any other bone or any other congenital conditions as far as I know. I am of typical height and weight for males of my age and ancestry and have no other particular diagnosed medical conditions beyond seasonal allergies.
RUS ruined my little league career, as well as my dream of becoming a bass player in a jazz band. As I approach fifty, I have had relatively minor problems with my right arm which I addressed by shifting more activities to my left arm (e.g. by acquiring an ambidextrous trackball which I operate with my left hand, which I prefer anyway). I don’t really know if I am right handed or left handed — some activities I can do with only one hand, so it is not a matter of preference. Fork in left hand, but spoon in right as I need that 40 degrees range of motion for liquids.
It would be useful to know if older people with this condition have encountered problems associated with aging or wear that we might avoid with advance warning.
I had a question if someone can help…….my son has been doing very well with this condition however the more and more I read, I read about physical therapy. My husband and I decided that surgery for my 9 year old is probably not an option since I have not read much success rate with it. He has told us in the last few days his arm is feeling “sore”. Is it recommended? Unfortunately, we live in a small town where there is no pediatric orthopedic or physical therapists specalizing in children………..the closest is almost one hour away.
THANKS
Dr Arun Pal Singh Reply:
February 22nd, 2011 at 7:32 am
@Sandi Ortiz,
The best advice I can give you is take out one hour and visit the doctor.
Nobody can guide you as better as the one who has seen your son in person.
All the best.
Emma green
My daughter was diagnosed with this at 5 months. I have been to schriners hospital and they were very helpful. at the moment all that can be done is to seperate the bone and rotate it to the must functioning position. before i even went to schriners I started my daughter in physical and occupational therapy to help her learn and mobility, i can not afford these on my own, but each state has something called RISE early intervention, they were very helpful. i recommend going that route.
I wanted to report that I took my 15 year old daughter to a specialist. I was referred to a hand specialist/ surgeon. Although there is no fix, he felt repositiioning of her radial and ulnar bones to lessen the supine would give her more use and remove the tension on her wrist. The outer bone on her wrist is pronounced from the tension the bones plce on it. The surgeon also suggested changing the position of some nerves to take off pressure. The recovery is 8-10 weeks. Pins in your arm, a cast and some physical therapy. He suggested surgery before your child hits 5 but stated it can be done later in life too. He seems to think the pain in arm, elbow and shoulder is from over straining to get the range of motion, and he did not see physical therapy as being a helpful option to gain motion as there is no real way to get range because the ligements, muscles, etc. did not develop due to the fusion of the bones. My daughter’s elbow looks different too. That is because she has no head on the radial bone. Get some x-rays…just so you can see for yourself what you have….although it is sad…….things could be so much worse…..how about no arms at all?
Oh my goodness! I’m SO relieved to have found this website. I’m a 21 year old female & ever since i was born i’ve never been able to rotate my left wrist. My arm at the elbow end DOES turn the full way – it’s just my wrist that doesn’t. BUT i was also born wit both hips dislocated – one went back normally the other didn’t (right one) so i have one leg shorter than the other. I’ve suffered from back neck/back pain since my early teens & in the last few GI problems. I’ve read on another website this could all be related. Do you think i should see my Doctor about this to get confirmation? (X-Ray?)
Ohhh i meant to have added i can only rotate my left wrist halfway (90 degrees?) & i can turn my arm the full way until about half way down. According to another website this is ‘Congenital Radioulnar Synostosis Type 2 – Occurs in the midforearm’. I’m also left handed which means i cannot hold a pen properly & when i write for too long my wrist & arm begins to hurt. But in general it doesn’t really bother me – i’ve got used to it. I also live in England. I’m really contemplating seeing my Doctor about this to see what she thinks.
Dr Arun Pal Singh Reply:
March 31st, 2011 at 10:37 am
@Charlotte,
Did you visit your doctor? Were your queries answered?
I’m 43 years old I have never been diagnosed with Congenital Radioulnar Synostosis. As I read these posts I’m actualy crying. When I was 5 my grandfather noticed my condition and realized I couldnt turn my wrist. I have faint memories of seeing a doctor but I could never remember the diagnosis. Both of my parents have since passed and I all remember is learning that surgery was not an option. I have worked manual labor most of my life and currently drive a truck for a living. I never realy had a problem with doing anything as far as normal activities because it was how I grew and devoloped. I always keep loose change for the drive thru so I don’t have to recieve change. It is noticible in my stance because my wrist hangs verticly andI do have a complex over that. I usualy have my left hand in my pocket when I’m walking or thumb hung in my pocket to make it less noticible.For the last few years I have devoloped severe pain if I sleep wrong and let my arm hang. Since my arm is in this unusual stance it doesnt lay flat and creates stress. Sometimes I wake up and it takes a long time in agonizing pain to slowly straighten it out. I do not have health insurance at the present time and can not afford a specialist. I would be truly greatful if I could get some second hand guidance from people with similiar conditions. I have adapted well with this but i’m scared it will lead to serious problems
As i read my post I realized I did not propery explain the associated pain when I sleep wrong. When I wake up in pain it is from bending my arm back in to position not from straightening it. I felt a need to correct this.
I was born with this in both of my arms. I found ways around turning my arms over to recive things, and in school my writting assignments wer typed or verbal, becuase of the pain. I havent seen a doc since i was 18 i’m 23 now and i havent had pain probably since jr high. i have worked labor and office jobs off and on since i was 16, and have never had a problem. I have even laied concret for a living. But today i was sent home from my current job because i had hurt my wrist after it had becan to hurt and become week for no reason at all. That was two weeks ago they have tried to finding work to take it easy on my hands but its a factery and every thing takes you hands. I can not go back till i see a doc for it and get released with restrictions. I dont know what kind of doctor to see. any suggestions??
Dr Arun Pal Singh Reply:
April 29th, 2011 at 6:12 pm
@Tiffany B,
Please see an orthpedist who is either a specialist in elbow or has much experience in these cases.
Dr. Singh,
I have posted here a few times, but I’d like your advice on an idea for possible surgery as I have spent a lot of time in the medical field. I am 38 year old male, I have bi-lateral RUS with 0 degree rotation. At their straightest, my elbows are slightly bent. Both humerus bones seem to be a bit too long as my elbows look atypical from others. In order to obtain supination with my palms as much as possible, I have to rotate at the shoulders to turn both palms up; and that ends up contracting at the elbow an bringing the arms close to my chest. As others have stated, I cannot accept change, hold eating utensils correctly, personal hygiene is challenging, etc. I have also been developing slowly increasing pain over the past several years in my forearm muscles, elbow joints and muscles, shoulder joints and muscles and scapula and neck muscles (more so the right due to being right-handed).
I understand through research that surgery rarely has a positive prognosis due to re-growth of bone in the original form from development. Considering the anatomy of the elbow joint, radius and ulna, would it be possible to insert or slip a sleeve or brace-type material over the bones after being separated to avoid re-connection of new bone growth? Would this allow re-positioning of the bones in normal anatomy arrangement? Thank you!
Dr Arun Pal Singh Reply:
June 10th, 2011 at 2:43 pm
@Mykal45,
A lot of things like including fat, muscle, fascia, silicone, and cellophane have been tried to prevent a recurrence but none of them seems have a good success rate.
As of now the reunion of separation is quite high.
@ Eric
I have the same thing. Half of the time, I can’t move that arm and need to use the hand of my other arm to lift it and bend it. It is very painful. I think it may be due to cutting off of the blood supply to that arm for several hours if you’re a side-sleeper and you rest you’re head on that arm. I usually try to put a pillow between my head and arm, then place a pillow under the forearm I am laying on to prop it up since my arm does not straighten all the way. Hope this helps!
Ok so I saw a doc that said it was a pinched nerve and had nothing to do with my condition. For 6 weeks, I have worn pads on my elbows to protect the exposed, pinched nerve. I went back today in pain I haven’t worked since I’ve seen him in fact I lost my job because they can’t hold my position, whatever, the point it this doc can’t tell me y I have pain in my hands other than the area effected by the nerve. He also said I am too young to have arthritis, at that point my sister decided he did not know what he was talking about because we have been preparing for me to have arthritis since I was a teen.
Hello everyone! I’m really happy to see that my condition has a name. It’s not strange to me that there are others who have it.
I’m 24 and have a twin sister. We both have this in our left arms, but my lucky sister can turn her right hand and mine stops at about 120 degrees (our right hand stops at 90). We have two older brothers who do not have this condition. My mom found out that i had it at 3 when I was going to get M&M’s from her I would hold my hand flat at my shoulder, we didn’t know my sister had it until we were 5 at bible school. We didn’t find out the name of this condition until a few years ago, we bought a cake to celebrate. It hasn’t really effected our lives, just like many of you we have ajusted to it and don’t plan on changing it. Why fix something that isn’t broken? Although in many cases I can understand the need to fix it.
My son was diagnosed with Congenital Radial Ulnar Synostosis at age 3. He is now 7 and is doing very well. He often asks if there are others with the same condition. My reply is “yes” but we have never met anyone else with this condition. It would be amazing to have my son interact with others that share the same condition. I would love to talk with others about this and give my son his wish to meet a friend that shares this condition.